why ? afraid of saying it or true ?

shmurciakova said:

I am really not sure why they say that. I mean, technically if you go for five years in remission from colon cancer, you are "cured". I know colon cancer is unlike breast cancer in that regard. Where sometimes breast cancer will return many years later.....colon cancer is almost surely not going to return, the more that time goes by. After, 2 years you're doing well, 3 years even better, 5 years awesome! And that does happen, even for Stage IV people, especially if you are able to have a resection.
Anyway, there are a couple of us on here who have been over 2 years NED at Stage IV. and I for one feel that I have already beaten the odds. I am still alive, and it has been 5 years.
Best wishes,
Susan

Well said, Susan.

And my oncologist tells me that while liver resection is the textbook Stage IV cure, that text needs to be rewritten.

I've been NED from Stage IV disease for 19 months just from chemo (and no chemo for 14 months). The scary thing for me is that I didn't have a resection or RFA. Why - because after chemo they could find nothing to resect or ablate - and they looked really, really hard! (Unfortunately I know that the scan techniques available can miss things, but given I really believe I am getting the best scans available I don't let that bother me for the most part.) So I have a hard time thinking in terms of being "cured" - but at the same time reading articles about Tony Snow really tick me off, because they sound like the experiences of so many of us on this board are vitual impossibilities. And, they aren't.

I'd love to hear the "cure word" too, but I'll settle for chronic disease (if it comes to that).
Docs may not want to use the "cure" word (it takes a lot for medicine to say disease is gone and as if it never happened and more time needs to go by with the newer treatments before they will start saying this, especially for metastatic disease.)

Take care (and thinking more and more about being "Cured")
Betsy

My oncologist and I had a long talk about this my last appt. He said the entire profession is very leary of anyone being in a non-surgical remission and even more so of a non-surgical "cure". The ole cut it out cure is the one they embrace the most.

He went on to say I was one of his few non surgical NED patients that has made it this far (2 1/2 years since stopping chemo without a recurrance) that he has ever had (in 30 years). And because of that, he will watch me much closer then others, which is fine with me.

After asking a few questions, he admitted that they all go off of stats and data and some of it needs to be updated but it will take a few years.

I just don't think they are comfortable with saying chemo/radiation alone really can kill tumors yet, surgery has always been the routine.

I also agree that they rarely use the cure word with Stage III and IV patients especially in the beginning. They use treatable and manageable instead but that can change over the years.

I try to work to prove their stats and their terminology all WRONG.

BUT, I also hate to hear the NOT a Cure words.....such a shame.

Great news for you and keep up the great work.

Lisa P.

The thing that really bothers me about the Tony Snow story is what the imaging and the blood tests have missed. I am sure Tony Snow was on the same surveillance program as all of us are on - 3 months blood test, annual scan. Well, when he went in, they said he had a "non-cancerous mass in his abdomen". After the surgery they said "liver metastasis". It sounded like his mass didn't light up on a PET scan. This makes me question the accuracy of the current imaging technology. Combine that with my own recent experience with scan, I am feeling a little shaky. I am so scared that I am making an appointment to see my oncologist to discuss more or different surveillence program.

Ying

JADot said:

The thing that really bothers me about the Tony Snow story is what the imaging and the blood tests have missed. I am sure Tony Snow was on the same surveillance program as all of us are on - 3 months blood test, annual scan. Well, when he went in, they said he had a "non-cancerous mass in his abdomen". After the surgery they said "liver metastasis". It sounded like his mass didn't light up on a PET scan. This makes me question the accuracy of the current imaging technology. Combine that with my own recent experience with scan, I am feeling a little shaky. I am so scared that I am making an appointment to see my oncologist to discuss more or different surveillence program.

Ying

Hi Ying -

I think this scares us all.

Being Stage IV I am "under surveillance" with PET, CT and blood work every 3 months. I like to think that means any recurrence would be caught quickly, but then something like this happens and you have to wonder............. One report (can you believe media reports?) said that the mass was discovered months ago "in the same location as the original tumor" and they had been "watching it". One has to wonder what exactly "watching it" meant and also, if he had his entire colon removed, then how could the new mass be in the same place?! (OK, I am splitting hairs, because this is freaking me out a little bit.)

Let us know what your oncologist says - I'll be seeing mine anyway on 4/16 so we'll probably have a chat about this.

Betsy

P.S. There was a hideous article in the Washington Post this morning - the gist being that advanced cancers are not curable, that treatments don't really impact the outcome (you know, the one we all fear) and that not enough oncologists explain this to their patients! I really needed this! IT was the kind of article that contained true "facts", including all those dreaded statistics we know and hate, but the slant was so wrong. The only thing that made me madder than the article, was the stupid fact that I read it!

KathiM said:

Hey, emily.....I was stage III, 1 lymph node....I was told I had 6 months to LIVE, and only a 37% survival rate after that....that was 2 years AND 6 months ago.....

HOPE is a wonderful thing...

Hugs, kathi

hi kath!

You know....I was thinking about this and though my onc never used the word incurable he did give me a percentage stat--what I remember was that I had a 30 % chance of living 5 years without the chemo and if I took the chemo it went up to 60%. But I think somehow by leaving out the word incurable I didn't go there (?).

Sheesh! You were told 6 months????

Sometimes ignorance is bliss.

peace, emily

KathiM said:

Ying,
could be the tumor wasn't metabolizing at the time of the PET scan...it DOES seem sort of wierd, tho....I wonder how much of the REAL story we DON'T know.....
For example...on MY breast cancer....I had been sent 2 years earlier to a surgeon for a biopsy. He convinced me that, with only a 3% chance of cancer, it seemed a little overreacting to do a surgical biopsy. I believed him....didn't have anything further...PET scan for the colon ca found the breast ca....sigh...
And now a word from the advocate.....

It is good that the press is following Tony's plight, because he was a healthy, 49 year old man when first diagnosed. This will hopefully (please don't think me TOO ghoulish) change some minds in Congress about funding much-needed colorectal cancer screening.....

Hugs, kathi

I saw my onc today, and she thinks the Avastin is making a difference in the outcome of recurrence. I would like to see insurance companies paying for testing earlier than age 50. The research is making progress, I just want it to be NOW.
Jo Ann

I find mass media too vague and generally innacurate when it comes to any statistic. I believe they use the statistic that sounds most intresting or sounds more profound.Using stats that are five or ten years old is acceptable with cancer, but look what has come up in the last 10 years for colon cancer.... that's the real story. Journalism knows how to capitalize on doom and gloom, or on the opposite side, insane miracles.

I recognize the important of big media news and definately keep an eye on it. But journalists aren't professionals at cancer research, or weapons of mass destruction or a lot of other things for that matter.I respect journalism, but most importantly, the story must sell.

The most updated and meticulous news I've found on cancer, i feel is right here. Of course we are all invested in it.